Nearly a week after filing my family’s 2011 federal income tax return, I am still reeling from the $45,000 deduction we took for unreimbursed medical expenses. With what we spent, we could have fed many families for a year.

By way of background: You’re allowed to deduct the amount by which your total medical care expenses for the year exceed 7.5% of your gross income (as adjusted by a bunch of exceptions). In other words, the tax write-off only equals a fraction of what you actually spend. And next year, the threshold will go up to 10%, making it even harder to take the deduction.

How did our deduction get that high? My husband Scott is in remission from neuroendocrine cancer--the rare cancer that took Steve Jobs' life. The good news is that we had the funds to get him the best possible care and he is doing great. He works full time as a lawyer and recently walked an entire marathon.

Still, every time I pay a bill, I empathize with the families that don’t have the means or ability to battle with insurance companies to save a loved one’s life. We gave up a lot to make ends meet, but we didn’t lose our house or our retirement savings, which is the choice many Americans face when they find themselves in a similar situation.

Our healthcare system is broken. Insurance companies and the Food and Drug Administration have more control over our access to services than the doctors who provide them. Those who need insurance most are often unable to afford any coverage.

One day when I went to pick up a prescription for Scott, my pharmacist told me, in a very matter of fact voice, that there was a glitch in the computer system, so it wasn’t being approved. He could take care of it in the morning, but in the meantime, what should have been “only” a $200 co-pay would be $18,000. My credit card company rejected the charge because it exceeded my limit.

I put my head down on the counter and sobbed, with at least six people waiting behind me. The pharmacist handed me a bottle of enough of the medicine to get my husband through the night and promised he would straighten it out in the morning.

How fortunate that the pharmacist was not only compassionate, but adept at working the system. He knew that often the first “no” from an insurance company isn’t the last word; it’s just the starting point for a slog of negotiation. As a lawyer, I am not intimidated by that prospect either. Plenty of other folks might be. That surely compromises not only the quality of care they (or their loved ones) receive, but also the chance of battling a life-threatening illness.

It used to be that when I heard the phrase “rising cost of healthcare,” I would think about my flu shot, that now costs $45 but used to be covered by insurance, or the 20% co-pay on my allergy medication, which used to be 10%. Scott’s illness gave the term new meaning.

Since he is thankfully in remission, our 2011 unreimbursed expenses—as high as they sound—were relatively low compared to other years. For example, between 2008 and 2010, he underwent seven surgeries, many of which were too complex even for Seattle, the major cancer research hub where we live. Our trips to Houston for extended periods of time for those operations, at major out of network expense, made our unreimbursed expenses significantly more than they were this year.

In 2011, we paid almost $5,000 above what our employers generously provided, for health insurance for our family of three (we have a nine-year-old daughter). In addition, we had out-of-pocket expenses of $6,000 for co-pays on prescriptions.

One pricey item was a pill that costs $250--about half the cost of a pair of designer shoes in the closet of one of the “Real Housewives of” TV shows. Scott sometimes takes three a day. Even if you have 80% coverage, which is what many insurance companies offer, our out of pocket was $50 per pill (our 20% co-pay times $250 per pill). And there were almost a dozen other drugs in his daily cocktail, each with a co-pay. That alone might force some patients to make difficult and life-threatening choices.

But for us the big ticket item was a test, known as a Gallium-68 scan, to diagnose new tumors. For that we went to London. All of the medical bills for 48 hours in London came to more than $10,000. While a similar scan, an Indium-111 scan, is available in the U.S., it can only detect larger tumors that would be more complicated, expensive and risky to treat once detected.

The scan in London (also available in many other European countries, including Germany, Switzerland and Sweden; as well as in Singapore, Israel and even Iran) can detect smaller tumors, takes two hours instead of two days, is less invasive, and allows for earlier diagnosis and treatment. But, even after years of clinical trials by the University of Iowa and Vanderbilt University, it lacks FDA approval.

Of course, you have to get to London, and a patient must be accompanied by a caregiver, so add the cost of flights and accommodations. When you are radioactive from the test, you aren’t supposed to sit too close to others. So for their safety, we splurged and my husband flew business class (while I was in coach). Ka-ching. Add two nights in a hotel in central London, so we could be near the hospital. Ka-ching, ka-ching.

Being in remission from Stage 4 cancer doesn’t mean you are done with doctors. It requires constant routine doctor visits, regular panels of tests, along with the periodic emergency room visit to deal with any number of untoward lingering effects of chemo.

Were those tests necessary? As Steve Jobs found out, neuroendocrine cancer is a stealth disease that can come back in sites far from where they began (usually the pancreas). Without the equivalent of military surveillance, it can go undetected until it is too late to medically intervene. So my answer, though the tests repeatedly came back negative, is yes.

Reduced testing, such as the latest recommendation that mammograms be performed less often, might save the country billions, produce fewer costly false-positives, and allow a redistribution of resources. It would also result in people like my husband being statistical collateral damage–one of the few who might have been diagnosed earlier by more frequent testing.

The fact that he was even sick was initially discovered (but not diagnosed) during a routine physical. At that point his physicians decided to periodically re-test him, and watch that the results didn’t change. It wasn’t until just a few months later, when he became acutely ill, that the medical mayhem began in full-force.

Last year Scott had only one unscheduled hospital stay--to control the excruciating pain from irritation to the membrane surrounding his heart, caused by chemo. That added more than $5,000 over what insurance reimbursed.

We spent several more thousand dollars on domperidone, a drug available in Canada and all of Europe, but not the U.S. because it has not been approved by the FDA. Not only is it used by cancer patients, it is used for all sorts of gastrointestinal diseases, and is frequently used by new mothers to promote lactation.

There are substitutes. They are less effective and cause side effects, including dizziness, inadequately dealt with by more prescription drugs. After almost 20 months on disability, beginning in August of 2008, my husband has been back at work since April, 2010. Dizziness would be more than an inconvenience. It would likely keep him from working. So here's another ridiculous choice some Americans are forced to make: Accept the dizziness and inadequate relief from an FDA approved drug, or find a doctor who has connections to get you the effective one from Canada.

As a mom, lawyer, wife, and sometimes caregiver (in no particular order), until recently I was too busy to pay much attention to President Obama’s proposed healthcare reforms. Last week, I delved into the Patient Protection and Affordable Care Act, known as “Obamacare.” It's the largest piece of healthcare reform legislation in U.S. history, and isn't light reading. Here are its key provisions:

Most individuals not covered by employer or government sponsored health insurance will be required to have a minimum amount of health insurance or be subject to a penalty.

Young adults can remain on their parents’ insurance until age 26.

The Act also attempts to increase access to coverage to more Americans; lower Medicare spending; increase coverage of those with preexisting conditions; and change the amount health insurance carriers can spend on healthcare coverage versus other expenses, such as advertisement and salaries.

Obamacare was passed two years ago, and some provisions are already in effect. But the entire Act is currently being examined by the U.S. Supreme Court to determine whether is is unconstitutional and should be overturned. I admit that, selfishly, I was curious about whether it would change our situation. (I am a tax lawyer and the Internal Revenue Code features prominently in my daily discussions, so I may have analyzed these numbers more than the average tax payer.)

Would Obamacare have reduced the amount my family would have spent on medical care in 2011 or the amount we will spend in 2012? Probably not. If the FDA would approve the procedures and medication prescribed by my husband’s physicians, it is likely that his insurance would cover them. But the FDA’s snail pace response or simple unwillingness to approve certain procedures isn’t covered by Obamacare.

Nor does the Act change the fact that doctors are often pushed into a corner, forced to prescribe treatments or follow protocols that are more expensive overall (but covered by insurance), rather than less expensive approaches that aren’t covered and therefore could still bankrupt a patient.

I don’t oppose Obamacare. Change must start somewhere. This is just the first step to help fix our very flawed system.

Next we need to find a way to reform insurance company practices so that they don’t dictate what a doctor can do based on whether it is covered. The FDA needs to be overhauled so that drugs that save lives can get approved (and reduce the extraordinary costs that families incur as a workaround, if one is even available), even if they don’t bring the profit of a Lipitor or Cialis to its manufacturer. I understand that the time and investment required to create any drug is enormous. But I still think the profit to the manufacturers of drugs such as Lipitor and Cialis is obscene.

We have to start somewhere. Fixing our broken system will take time. If the Supreme Court finds Obamacare unconstitutional, we will be forced to start this effort all over again.That would be a giant setback.

I'm a financial journalist and author with experience as a lawyer, speaker and entrepreneur. As a senior editor at Forbes, I have covered the broad range of topics that affect boomers as they approach retirement age. That means everything from financial strategies and inves>...